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Eli's Reflux and Fundo Story
Eli is our third little boy. He was born August 23, 2002. He weighed 10 pounds. He was already busting out of his little newborn outfit when we got him for the hospital. I knew something was wrong right from the beginning in the hospital. He cried and arched and acted like he had a tummy ache right from the beginning with nursing. Around 3 o'clock a.m., his first night in the hospital after being born, he threw up breastmilk and seemed to feel better after that. I told them that I didn't want to take him home yet. I did not know what to do with him and he was my third baby.
After we got him home, he seemed happier. It didn't last long. For the first 7 months of life, he caught every illness you could imagine and had a difficult time getting over them. He would get ear infections that lasted through 3 treatments of antibiotics, pneumonias, RSV, sinus infections, bronchitis, chronic colds and coughs. Through all of this, he was vomiting everything, and he would vomit old food. We would feed him green beans and the next night if he didn't vomit that day (which was rare) he would vomit green beans from yesterday's dinner. He would vomit old curdled milk at 4 o'clock a.m. or the next morning. He would wake up vomiting whatever he had had the night before, but I assumed that it was from being ill and that something was wrong with his immune system. I had no idea this could be caused by reflux.
Our pediatrician decided to send us to the Children's Hospital to see an immunologist. After some tests, we found that he did have a low immune system. His immunoglobulins and fighter T cells were low. Because both were low, he was considered immunodeficient. He was also tested for CF because of his symptoms (big scare), but it came back negative, thank the Lord! Our immunologist sent us to the GI because of the vomiting. He told us that he would see us back in 2 months and that Eli's immune system would be tested again to see if it was deteriorating or building up.
We went to the GI. He immediately diagnosed Eli with reflux and put him on Zantac, which did not work for us. Eli was actually worse. Then began the different medicine trials. We ended up on Prilosec which was a miracle drug for Eli, his drug of choice.
The Upper GI he had done showed significant reflux, and while we were watching the fluids going up and down his throat, they noticed on the screen that his tummy wasn't emptying at all, so they had us walk around the hospital and come back in an hour to see if he had emptied. He had not, so they scheduled an emptying study.
So, after an hour of being held down on the table with sandbags, his little tummy was still full during the emptying study. He was put on Bethanechol and Erythromycin as well for the next 9 months, 3 times a day. Not fun. And, this kid could spit out medicine even if shoved down his throat, while plugging his nose and blowing in his mouth.
Well, needless to say, the vomiting continued, and the drugs for his DGE (delayed gastric emptying) weren't helping. His immune system did go back up once we started treating the GERD. He was getting sick less often, so all that was left was the GERD, which included painful swallowing, red eyes, discomfort, esophagitis, vomiting and retching, and continued illnesses.
Our GI finally sent us to meet with a surgeon to see what he thought since it had been 2 years. I will also mention that our GI has his own surgery team, but thinks they don't do a good enough job (scary). So, he sent us to UCLA. They are 3rd in the country and #1 in the west with their specialty being GI surgeries. I went into this with all kinds of questions about what kinds of tests and things he would want on our son, and if we could see their GI since our GI couldn't remember drugs or procedures that Eli had had. So, my husband and I were extremely surprised when he told us our son needed a fundo and a pyloroplasty right away. We were stunned. He said that based on looking at his test results that the magnitude of the reflux was so bad that he needed the surgery. If not, he could develop problems like barretts, erosions, bleeding and major damage, or cancer to the esophagus. We told him no, that we had read too many horror stories and knew too many families with failed Nissens. And, we didn't want our son retching and not able to function properly. He assured us that this was not the case. And, he also said that the side effects of fundoplication were worth it compared to letting the reflux continue. He was our second opinion.
We went home, thought on this, talked to people and sent some statistic numbers to him. He was quick to reply with reassurance and statistic numbers that were "more accurate", which calmed our fears. We are Christians and had been praying throughout all of this. We felt at this point that the Lord had lead us to this surgeon. We liked him and trusted him. I could not make this decision, because I was just torn over the 'what if's'. Two weeks later, my husband scheduled the surgery from work without my knowledge and told me when he got home. February 11, 2005 was the date--a Friday. He also put in that he thought this was the right choice and that we just needed to trust the Lord. I was thankful to my husband, because this was a decision that I could not make and stick with.
We went into the pre-op room scared to death, with my mom at our side. This was the worst part for those of you who will be going through this. They gave him this medication that was supposed to knock him out (Eli does not do oral). I told them he wouldn't take it, but they didn't realize how serious I was, so he fought it and got half down. So, needless to say, he was half knocked out, and they had to pull him off of my husband's body screaming and reaching for us all the way into the operating room. It was heart wrenching and definitely the worst moment of my life. We are still not over this.
While in the waiting room, we got a call from the surgeon. He told us they weren't finished yet, but that he wanted to let us know that the fundo went great and he didn't expect it to be too tight because he went ahead and dilated it while he was in there, since that was my biggest fear. Eli was a 36 pound 2-year-old at this point, and loved to eat more than anything. Then the surgeon began to tell me that when they went to do the pyloroplasty (open the bottom so he could empty faster) they found that his pyloric sphincter muscle (the one that pushes food out) was still attached to the side of his liver and had never separated during development. It was held to the side of the liver in an upward position with bands of tissue and hadn't been able to work properly. It was kinked. I immediately began laughing. That sounds crazy, but you have to understand that I wasn't sure he needed this surgery and this was my confirmation. We would have never found this if we hadn't done the surgery. My next question was, couldn't that have caused him to look like he had reflux and did he still need the fundo after finding that? Well, I still have those questions. It was too late. He assured me that he has severe GERD as well. Now, over a year later, I know that to be true.
I went in to post-op scared to death, expecting him to look bad. He looked better than expected. I lifted the hospital blanky to see the reality that had been done to him. Five, smaller than I had imagined, incisions were there. Phew! I got that over. Then I sat and stared at him. The nurse came by and told me he would probably sleep for hours. Of course, right then he began waking up. He was crying, so I lifted him over with all those tubes and the irritating things stuck to him. I held him closely, crying. He had tubes everywhere and it was difficult. After an hour and a half, the nurse came by and asked if I would like a chair with arms. I immediately replied "YES!" We finally got a room after that and went up to the children's hospital.
Well, the rest of the day and night, Eli was either begging for a drink with his horribly chapped lips or in a drug induced sleep. He only had morphine 2 times that day, because the new young nurse told us we shouldn't ask unless he was in excruciating pain. He was crying in pain and my husband, my mom, and I were in tears because it was so awful. The older night nurse came on and we liked her much better because she gave him what he needed to get him through it. He finally peed at 11:30 that night, which was a big deal to the doctors. They had to Bolus him.
The next day, he was in a lot of pain, but after one more good dose of morphine, he began asking to walk, after an interesting ride down the hall in a wagon that seemed to make him realize life could go on. Before the wagon, I think he thought he was going to die in that room. He began to get better after that. He finally had a drink, and ate some jello and some broth. He was sucking down the beloved Capri-Suns.
We took him home on Sunday. He soon began the soft food diet. He was eating pancakes, pastas, hot cereals, green beans, and other foods. Then Sunday, 8 days after surgery, he was munching on a soggy breadstick and swallowed a big bite. He began choking, retching, slimy stuff coming out his nose and mouth. It was horrible. It lasted about 10 minutes and really scared us. We gave him liquids the next few days, and then we tried feeding him after that and he couldn't eat. He retched up whatever was fed to him.
We took him back to UCLA and had another upper GI. His tummy was draining (yeah!) and we could see his new valve (fundo) was intact. I'm not sure that that is what I wanted. They said it looked a little swollen. They put him back on a liquid diet for 2 weeks. After that, things got worse and better back and forth. He has dealt with dumping syndrome, weakness, retching, and some vomiting. Still, he is so much better post fundo. He has grown so much and after the fundo, and his speech and development have taken off. I didn't realize how much reflux was holding him back.
He is now 4 years old, and he is so happy and loves being alive. He has an appreciation for life and feeling good that I don't see in others. He does not take life for granted. He enjoys his time and he is the light and entertainment in this household. He is loved and adored by all who meet him and especially by his extra special two big brothers, Sabin and Andrew.
Recently, he has been diagnosed with fructose/sucrose malabsorption and milk protein allergy. Sadly, this could have been worsening his reflux or the cause of his GERD all along.
Overall, the fundo was the best thing that has helped our son, although that is not the case for many children. We are blessed. We have many more challenges in the future and we are still working on figuring Eli out. He is a very happy boy and all who know him adore him.
Written by: Eli's Mom, Erin
Read more about Children's Stories:
Noah's Reflux and Fundo Story
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